Using teamwork to improve diagnosis of fetal heart defects

Fetal Heart Clinic

Though estimates vary, according to a study published in the journal Prenatal Diagnosis from the Centers for Disease Control which focused on mothers of babies with congenital heart defects, only 15 percent of women reported they first learned about their infant’s condition prenatally.

At Children’s Mercy, not only is the goal to improve prenatal diagnosis of congenital heart defects, but to provide the expertise, counseling and state-of-the-art care necessary to support these children and their families prenatally and beyond.

“When I started at Children’s Mercy, less than one-third of infants with congenital heart defects were diagnosed prior to birth,” said Tara Swanson, MD, Director of Fetal Cardiology. “Now that number is up to more than 50 percent overall, with more than 80 percent of the most severe cardiac anomalies being detected prenatally.

Prenatal collaboration

Though many children’s hospitals have fetal cardiology programs, few are in the unique position of the Fetal Cardiac Clinic at Children’s Mercy.

“The Fetal Cardiac Clinic is part of a robust interdisciplinary team that collaborates with the Elizabeth J. Ferrell Fetal Health Center,” Dr. Swanson explained. In fact, Children’s Mercy is one of the few freestanding children’s hospitals in the United States that provides special care delivery services for mothers carrying a fetus with congenital defects.

Since its opening, the Fetal Health Center, has consulted with more than 1,000 families and has delivered more than 500 infants needing specialized care in the newborn period. Approximately 50 percent of these consults have been for a cardiac diagnosis.

To serve this volume of patients, the Fetal Cardiac Clinic now includes six physician subspecialists, four dedicated fetal cardiac sonographers, two nurse coordinators and one nurse practitioner. They see patients five days a week.

Another unique feature of the Children’s Mercy program is that the very sickest babies can be delivered in the cardiac operating room or catheterization laboratory and receive an emergent cardiac intervention in the first few minutes of life if necessary.

Fetal Cardiology Checklist

Because fetal cardiology is part of an interdisciplinary team devoted to the child, the team provides integrated counseling when a family’s fetus is diagnosed with a congenital heart defect prenatally. In addition to a fetal cardiologist, team members include a neonatologist, social worker, genetic counselor, nurses, surgery and palliative care providers. The team reviews the baby’s diagnosis and treatment options with the family.

“Prenatal counseling brings all the appropriate specialists to the table, improving communication between the team and family,” Dr. Swanson said. “We do the very best job we can to prepare families for life with a child who has a congenital heart defect. We don’t want them to be overwhelmed, but there is so much to tell them. We discuss everything from breastfeeding to visitation in the NICU to how this may impact their finances and relationships.”

To be certain the team addresses each appropriate concern, the nurse coordinators maintain a fetal checklist, a record of everything the team discusses with the family. After Dr. Swanson shared the checklist at a national conference, it became widely requested by other fetal cardiology and counseling programs across the nation.

“The checklist is a tool we developed and use at Children’s Mercy,” Dr. Swanson said. Other programs are welcome to download a copy and use it. Even the national Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC), a group of parents and providers who are working to improve outcomes for children with heart defects, used the checklist as an example as they work to develop their own checklist.

Furthering quality fetal cardiac care

To ensure continued quality improvement, the Fetal Cardiac Clinic is involved in collecting and analyzing data to determine outcomes for children diagnosed prenatally and delivered at Children’s Mercy, versus children delivered elsewhere and transferred postnatally to Children’s Mercy for cardiac care.

The clinic also is in the early stages of working with the hospital’s Genomic Medicine Center, using whole genome sequencing to determine if there are any genetic factors connected to hypoplastic left heart syndrome. To improve prenatal diagnosis throughout the region, the clinic hosts an annual Fetal Cardiology Symposium aimed at educating area obstetrics sonographers in how to screen for heart defects. The clinic also offers sonographers the opportunity to shadow the Fetal Cardiac Clinic team, helping them become more adept at detecting complex cardiac defects.

And, fetal cardiology has expanded to western Kansas, making this subspecialty available to patients at the Children’s Mercy Wichita Clinic.

“We are dedicated to improving prenatal detection of cardiac anomalies in our region,” Dr. Swanson said. “We know that diagnosing a congenital heart defect prenatally matters for these critically ill infants and their families.”

Learn more about the Fetal Cardiac Clinic.

Learn more about the Ward Family Heart Center.